Infundir amor: la perspectiva de un padre

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
Today HFA is proud to present a special “Infusing Love” blog — an excerpt from our new book, “Papás en acción: historias reales de la comunidad de trastornos hemorrágicos.”  To order your FREE copy of the book, click AQUÍ.
Parenthood began for me as it has for many others; I was a first-time father, venturing through a myriad of feelings. During the pregnancy, I was racing through an emotional rollercoaster of anticipation, nervousness, excitement, fear, joy, and finally relief. And then, my baby boy finally arrived. As I held him for the first time, the world seemed to stand still. Motionless. Oh, my gosh, I thought. I’m a father. A little gremlin – what the heck am I going to do with this? I can barely take care of a dog. Millions of thoughts raced through my mind; I began to see our life together as a family, and thought of all of the wonderful things I would share with my son.
We started by sharing with him our love of golf, by naming him for Ben Hogan, a professional golfer. I admired Ben Hogan for his resolve, his fierce, competitive spirit, and also his story. Ben came from a rough beginning, and struggled to become an epic golf player. A car accident derailed his career, but he worked to come back as a player. Little did we know how similar our own little Hogan’s experience would be. All I knew at that moment was that I was a father, holding my son.
Less than a week after that wonderful, motionless moment, my life as a father changed forever.
Hogan’s circumcision had been complicated by bleeding. Afterwards, we noticed bruises at the back of his head and neck, but we didn’t know what they meant. When he was six days old, Hogan stopped eating, and had a seizure. We went to the ER, where we were told that he was bleeding inside his head. Hogan was rushed into emergency surgery. Soon afterwards, Hogan was diagnosed with a bleeding disorder called hemophilia – something I had never even heard of before, and knew nothing about.
I found myself thrown onto a very different emotional roller-coaster, with drastically different thoughts and feelings. I felt pain, agony, and guilt. As I whirled through these feelings, even more complications entered into the situation: Hogan developed an inhibitor, sending our lives into a tailspin. We were spiraling, spinning downwards into the unknown.
I spent much of the next year bouncing between anger, resentment, sadness, self-pity and depression. Had it not been for my courageous wife standing by me and helping guide me through the horror I was experiencing, I may have not had the strength to become the father I am today.
We both felt a range of emotions, but Corby was more even-keeled. She learned the terminology and lingo, and when I would flip out, she could talk to the doctors and nurses. When a preschool didn’t want to admit Hogan, Corby advocated for our son. And when we began infusing Hogan, Corby handled the infusions. She was wonderful.
One day, Corby sat me down. She explained that, as the only parent who could infuse, she couldn’t go out with friends, or away overnight. And then it hit - Dan_9
Hemophilia had changed our lives, limiting what we could do, adding to our responsibilities until parenthood felt like a burden. I began to realize that it’s not about me – this is bigger, and I had to grow up. My new place in life was here, with my wife, and raising our child. I needed to share the work. I have to do this, I told myself. I began to accept our new reality and educate myself about hemophilia, inhibitors, infections, factor, ports, and more. I had great support at work, and tried to explain what I might need from them. I worked diligently to prepare myself for whatever unplanned adventures might lie ahead, networked with bleeding disorder families about insurance, and more. Daily infusions, untimely emergency room visits, hospital stays and sleepless nights of pain management became our new reality. This was not going away any time soon, so it became apparent that I needed to change my perception of what fatherhood was all about.
It wasn’t until I actually got out of my own way and started becoming a better person that I was able to be a better husband and father. There was no manual for this, but we worked together and thought and did – and still do – the best we could. Don’t pity us, I wanted to tell people. And don’t think that I’m any better than anyone else. I’m just a father, raising a child. He is my son, and I’m just doing what I need to do. And we did.
Our threshold for dealing with adversity is now so much higher. I found that raising a son with health complications has not been a burden, it has not been inconvenient, and it most certainly has not been a mistake. Our life is no longer measured by unrealistic expectations, but rather by miraculous milestones and brief, unexpected moments of happiness. Finally, being a father became fun. Once, I had felt as if I was being punished, but now I understood that I was wrong. I have been rewarded with a son who teaches me the importance of life. In the past eight years, I have grown and learned a lifetime of lessons that have forever shaped who I am.
Dan, and his wife, Corby, live in Arizona with their sons Hogan, and Parker.
*Nota: "Infusing Love: A Mom's View" es una colección de blogs de opiniones personales y una representación de las experiencias individuales. Si bien se realizan grandes esfuerzos para garantizar la precisión del contenido, las entradas del blog no representan a HFA ni a su Junta Directiva. El blog tampoco pretende ser interpretado como consejo médico o la opinión/posición oficial de HFA, su personal o su Junta Directiva. Se recomienda encarecidamente a los lectores que analicen su propio tratamiento médico con sus proveedores de atención médica.

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